First appointment at CFS Discovery

Blog entry posted by lafarfelue, Mar 31, 2017.

I recently had my first appointment at CFS Discovery (*edit* located in the outer eastern suburbs of Melbourne, Australia). I saw Dr McDonald. He and the nurse there are quite pleasant. It's just SO nice to be taken seriously, and have people who are familiar with seeking ways forward with this damn illness.

I'm reallllly happy that I decided to cough up the money for it, and feel very fortunate that I can afford it.

Writing this out for posterity, and maybe it might help someone else along the way. I'll try listing everything below in a way that's easy to scan. Let me know if I can structure it better to make it easier to read/skim.

Testing
  • I took the standing challenge with their nurse, to test for Postural Orthostatic Tachycardia Syndrome (POTS). I didn't make it all the way through that test and was scored as having a 'high difficulty' during the test.
  • Gave 4 large vials and 2 small vials of blood (I think? I'm petrified of needles, so don't really remember that part past my very adult freaking out and associated adrenalin rush... ahem). I can't remember what this was taken for (hahah oh brainfog, what a gas).
  • Was given a take home 24hr pee collection bottle to test for potassium and sodium in my system. I have completed it and handed it to a clinical lab.
  • Was given a referral thingy to test my breath to see if I have lactose or fructose intolerance. Yet to undertake this.
  • Took an IgG test for food intolerances, because I was already there and I was curious.
Diagnoses
Definitely have ME/CFS. Possibly worse than I had originally suspected, when listing off my symptoms? I was kinda surprised at what were symptoms of ME/CFS and not just 'my silly body doing weird things like it has for a very long time hahaha ... oh'.

Diagnosed with POTS. I am utterly unsurprised by this, and have had symptoms of POTS for ... years. Maybe over a decade? I think my Mum also exhibits symptoms of POTS. No one I've ever raised any of those symptoms with suggested testing, or possible causes for it. So this is already a good thing, especially with the recent advances in POTS research!

Outcome/ meds

POTS: I have been prescribed Inderal (Propanolol) to help with POTS and advised to start taking AquaForce (low fructose version) to help with POTS symptoms. Already upping salt and water intakes significantly. Peeing a lot. Okay with peeing a lot because it helps me feel less awful. Just started on Inderal last night, tapering up from 1/2 the prescribed dose over a few days. Will start the AquaForce once I can get my hands on some (I was advised not to take it during the 24hr pee collection, as it would affect what they're testing for).

Hoping that the med works, and that I might have a chance of reduced POTS symptoms, reduced CFS symptoms... for me right now, I mainly hope that I regain some lost mental cognition as a result of better blood flow to my brain. Other benefits would be welcome too, of course. Fingers crossed!

IgG test: Apparently intolerant to almonds, celery (no huge loss there, blech), whole egg, cow dairy. ¯\_(ツ)_/¯

Next steps
Next appointment at CFS Discovery is in May, during which time I will be able to undertake all the other tests and see how the Inderal goes for me.

General ramble
After seeing the govt funded CFS specialist twice (Royal Talbot hospital), and being told outright at the first appt to not bother testing further for other things because 'it usually brings up more issues and generally doesn't help anything'(?!?!?!), CFS Discovery is a breath of fresh air. The govt funded CFS specialist had also suggested I might have POTS, but never gave me a proper test for it, and didn't elaborate on what POTS might be. Cool. Thanks, buddy. :\

Dr McDonald (CFS Discovery), on the other hand, asked what felt like all the right questions, didn't dismiss anything I told him, and queried some things that I wouldn't have necessarily thought about myself. Patient and kind, and has a sense of humour! The nurse there was also gentle and sweet (in a nurse 'firm and direct' kind of way :)). I had a really really really really reaaaaaallly slow onset... and I know I have a long way to go, but this has given me much needed hope. Just being believed and understood ... *cue happy ugly crying*
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  1. lafarfelue
    A couple of people I've spoken with who've been dealing with their own ME/CFS on their own terms (self-testing etc), reckon that maybe they wouldn't really bother, because they feel that nothing additional would be picked up by it. I've only really started on this treatment/self treatment journey in the past year, so it feels like I'm shortcutting some of that stuff. Feels worthwhile to me at the moment. Also, I want to be sure that I've covered all my bases when it comes to recognition at work and potentially applying for govt disability pension.

    I hope if/when you go, you feel there's a benefit :)

    I've been prescribed 20mg per day *edited to correct this dosage*. Do you take it or have experience with taking it?
  2. Chelby
    That sounds excellent, I wish it were a little more affordable, I am considering going there myself. What dose of propranolol are you going to go up to?
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  3. lafarfelue
    Thank you, both.

    @marjojo, I hope the Propanolol might be an alternative med for you! (I'm not really 100% across things for POTS yet, but have noted that intolerance and nil effect are common for PwME.)

    @trishrhymes It's in the outer eastern suburbs of Melbourne, Australia. (I'll update my post, thanks for asking!) The clinic's apparently been around for 20-30yrs (perhaps more, the nurse wasn't sure), but it doesn't seem to be widely known about in the medical community or among general PwME. Seems very strange to me, but I guess that's what happens when ME/CFS is dismissed as a psychosomatic illness for so damned long. :\
    Chelby likes this.
  4. trishrhymes
    Sounds wonderful. Where is this clinic? Do keep us updated.
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  5. marjojo
    It's so good when someone listens, isn't it. Was diagnosed with POTS couple of years ago, made me perversely hopeful as there was medication to try, but couldn't tolerate the medication (Fludrocortisone). Need to check out what you're taking. Hope it really helps you.
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